My experience with PD smell tests

[scotta]

Recently, I received an email from MJFF about one of their MMPI projects using impaired sense of smell as a possible marker for developing PD in the future. The study requires not being diagnosed with PD. This rules me out but my wife was accepted into the study. They sent her a pack of 40 scratch-and-sniff test strips and asked her to report what each strip smelled like using an online multiple-choice form.

After completing her tests, she gave me the test strips. To my surprise, I could not identify any of the smells. I could detect a slight medicinal odor from many of the strips, but none were obviously one of the four choices. This was surprising because I often perceive smells from food, so I expected a better result from this test. But the tests seem to correctly find some difference between my healthy wife and myself, 2.5 years after PD diagnosis.

Here's the link for the study:

mysmelltest.org/sfmc

[Rupa88]

as usual MJFF is only wasting time on redundant research, ughhhhhhhhhh

[kaypeeoh]

Loss of sense of smell is practically a hallmark sign of PD. But what about the opposite: Smelling things that aren't real? I had that problem for 20 years.

[1LittleWillow in reply to kaypeeoh]

I had the same problem (phantom scents), and it began with a head injury in 2004. I was diagnosed with Parkinson's in 2018, but first symptoms began in 2015/2016.

[kaypeeoh in reply to 1LittleWillow]

Someone told me it was 'Olfactory hallucinations' I was diagnosed with MS. I took weekly infusions of Tysabri for two years. I knew when it was time for the infusion because the phantom scents would be quite strong. After two years the odors stopped and I quit taking the infusions. Shortly after I was diagnosed with Parkinson's.

[Ghmac]

In 2024 we saw a MD, a Geriatric specialist, and an ENT specialist. NONE of them even had a smell test. When I ask the ENT doctor if he gives smell tests, he said, "Why would I do that?"

[kaypeeoh]

I believe Dr Mischley is collecting dog to be trained to detect PD through scent.